Thursday, November 19, 2015

Journalist David Tuller writes about how he became interested in CFS

Journalist David Tuller writes about how he became interested in Chronic Fatigue Syndrome and what brought him to write so much about the PACE Trial (the largest CFS trial ever)

Read David's informative articles on the PACE Trial here:

Monday, November 16, 2015

Chronic Fatigue Syndrome in Oprah magazine

"After a battery of diagnostic tests for viruses and bacteria, [Montoya] continued Cavanagh Kramer on one of the antivirals she'd been prescribed, but made a few important changes: He added anti-inflammatory and immune-modulating drugs, as well as an antibiotic for the bacteria he found in her blood. ... Historically, many doctors considered CFS a psychosomatic disorder that required psychological—not medical—intervention. But recent research by Montoya and others has compelled the medical community to take the condition much more seriously. ... Montoya and his colleagues, however, were able to pinpoint immune abnormalities in the blood of CFS patients who had recently become ill, suggesting possible biomarkers for the disease. ... A picture of patients with highly inflamed bodies emerged before our eyes and validated what they've been telling us for decades."

Thursday, November 12, 2015

Right to Try: How Govt Prevents Americans from Getting Lifesaving Treatments

Darcy Olsen is President of the Goldwater Institute, a research and legal center, which is currently behind the Right to Try initiative, to give terminally-ill patients access to medications before the FDA approves them.
I saw her on TV this morning.  She asked pointedly why drugs which are available in Europe are not FDA-approved for use in the US.  Apparently Right to Try would allow Americans to use anything that's approved elsewhere.
Ampligen has been used in both Belgium and Canada, but in the US, FDA just keeps asking for more testing.
Could that possibly be because Dr. Reeves and Dr. Straus so vehemently insisted that CFS is all in our heads, and it wouldn't be politic for FDA to approve an anti-viral drug for something CDC says is purely psychiatric?
Unfortunately, the magic words in the proposed legislation are "terminally ill" and I don't think anyone classifies ME/CFS as "terminally ill".

Wednesday, November 11, 2015

Anosognosia - Neurological Inability to Recognize Illness

"anosognosia is the lack of awareness of the deficits, signs and symptoms of an illness. It is not merely a denial; it is an actual neurological deficit"
"anosognosia is one of the more troubling symptoms of severe mental illness as it prevents a person from getting the help they need. The "easy" way to handle this is to rely on a "doctor knows best" approach and simply medicate without consent."
"you can't talk someone out of a delusion. That's the definition of delusion. It is a belief in the face of contrary evidence."
* * *
A lot of people (doctors and psychobabblers included) think this is our problem -- that we don't want to admit that we have a mental illness and are clinging to the delusion that we are physically ill, and therefore need to be medicated without consent for whatever erroneous amateur psych diagnosis that particular doctor likes best (I've been tagged with anxiety and depression, while psych experts have never found signs of either).  Doctors dismissed those psych reports and wanted me to go see another shrink, one who might agree with them.
But the reality is, it's those psychobabblers who have the problem.  "You can't talk someone out of a delusion. That's the definition of delusion. It is a belief in the face of contrary evidence."  Shown evidence of physical illness (abnormal temperature, swollen glands, abnormal test results), they will continue to insist that there is nothing physically wrong with you.  At one appointment, my temperature was 95 -- hypothermia -- which did not disturb the doctor as much as it should have, because he refused to accept any contrary evidence.  When confronted, he shrugged, "you were outside".  Yes, I was outside for a few minutes in the sun on a 60-degree day, but that wouldn't push my temperature down to 95.  He wanted to see a depressed divorcee too lazy to work, and was willing to dismiss any symptoms or evidence that there was more to it than that.  He was delusional, and in order to continue his delusion, he had to convince me that I was delusional in thinking that I was physically ill.   He couldn't do any tests that might prove I was right and he was wrong, so he simply refused to order those tests.

Tuesday, November 10, 2015

A New Type of Treatment for Chronic Fatigue Patients - Autonomic Specialists

"TVAM is a treatment involving the endovenous stimulation of autonomic nerve fibers via a minimally invasive procedure. The process of manual stimulation of these nerve fibers appears to have a modulatory effect on the autonomic nervous system."

Tools for Critical Thinking in Biology - Stephen H. Jenkins

Dr. Marc-Alexander Fluks reports "Student textbook has section about XMRV-fraud and CFS"
Title: Tools for Critical Thinking in Biology
Author: Stephen H. Jenkins
Publisher: Oxford University Press
ISBN: 978-0-19-998104-5
Date: April 28, 2015
Price: US$ 49.95

The full text about the XMRV-fraud and CFS is available online,
Chapter: Science as as Social Process
Section: Correction of Faulty Results after Publication
Pages: 219-226
"Extreme cases of CFS are similar to end-stage AIDS."
"Until recently, the Centers for Disease Control and Prevention has emphasized the psychosomatic hypothesis in their research on CFS, although several scientists have looked for associations between CFS and infection with various viruses."
Then there's a description of the XMRV fiasco.  "This outcome doesn't mean absolute refutation of the hypothesis that CFS is caused by an infectious agent -- another virus or even another type of infectious agent could be responsible for the disease. ... the research that followed Mikovits's study and culminated in Lipkin's project has spurred greater scientific attention to CFS and may stimulate more research on various hypotheses about causes of the disease."
* * *
The good news is that students are now being taught the possibility that CFS is not just all in our heads, but caused by a virus.
Unfortunately, the whole XMRV mess is exposed to a wider audience in a way that could scare students off getting involved in controversial research like CFS.  Since this is a book about "critical thinking", it was a good description of something that was disproved by critical thinking (trying to replicate research and not just accepting it as true based on one study), so there is some benefit to it if you turn it on its head, the studies claiming IAIYH also cannot be replicated when using real CFS patients rather than "tired all the time" depressives.